Texas

Texas

ADA Center
Southwest ADA Center
TIRR Memorial Hermann – ILRU
1333 Moursund
Houston, TX 77030
(713) 520-0232 (V/TTY)
(800) 949-4232 (V/TTY)
http://www.southwestada.org


Assistive Technology

Contact University Centers for Excellence in Developmental Disabilities – Center for Disability Studies. Career & Technical Education
Texas Education Agency
1701 N. Congress Avenue
Austin, TX, 78701
(512) 463-9581
http://tea.texas.gov/cte/


CHIP – TexCare
(health care for low-income uninsured children)
Members: (866) 647-6558 Non-member: (800)990-8247
http://www.texaschildrenshealthplan.org/what-we-offer/chip/


D D Council
Texas Council for Developmental Disabilities
6201 E. Oltorf, Suite 600
Austin, TX, 78741-7509
(512) 437-5432
(800) 262-0334
http://www.txddc.state.tx.us/


Early Intervention
Dept. of Assistive & Rehabilitative Services
Division for Early Childhood Intervention Services
4800 N. Lamar Blvd.
Austin, TX, 78756
(512) 424-6754
(800) 628-5115 (Information & Referral)
https://hhs.texas.gov/services/disability/early-childhood-intervention-services


Epilepsy


Epilepsy Foundation of Texas – Houston/Dallas/Ft. Worth
(888) 548-9716
http://www.eftx.org/


Independent Living
Texas State Independent Living Council (SILC)
4319 James Casey St. Suite 100
Austin, Texas 78745
(512) 371-7353
(877) 371-7353
http://www.txsilc.org/


Intellectual & Developmental Disabilities
The Arc of Texas, Suite 100
8001 Centre Park Drive
Austin, TX, 78754
(512) 454-6694
(800) 252-9729
http://www.thearcoftexas.org/


Learning Disabilities
Learning Disabilities Association of Texas
P.O. Box 831392
Richardson, TX, 75083-1392
contact@ldatx.org
http://www.ldatx.org/


Mental Health – Youth
Children with Special Health Care Needs (CSHCN)
Services Program
Purchased Health Services Unit
Department of State Health Services
1100 W. 49th Street
Austin, TX, 78756-3179
(800) 252-8023 (Program Hotline)
(888) 963-7111
http://www.dshs.state.tx.us/cshcn/


Mental Health
Council of Families for Children
P.O. Box 14259
Austin, TX, 78714-2591
972-494-3232
http://www.counciloffamilies.org/


Mental Health America of Texas
1210 San Antonio, Suite 200
Austin, TX, 78701
(512) 454-3706
https://mentalhealthtx.org/


NAMI Texas
Austin State Hospital Campus
Building 781, Room 428
(512) 693-2000
(800) 633-3760
http://www.namitexas.org/


Parent Organizations
Community Parent Resource Center
1101 E. Schuster
El Paso, TX, 79902
(915) 217-2747
http://www.cdicelpaso.org/


Family to Family Network
13150 FM 529, Suite 106
Houston, TX, 77041
(713) 466-6304
http://www.familytofamilynetwork.org


Family Support Network, Texas A&M University
4225 Texas A&M University
College Station, TX, 77843-4225
(979) 845-4612
sharp@tamu.edu


Texas PTA
408 W. 11th Street
Austin, TX, 78701-2113
(512) 476-6769
(800) 825-5782
http://www.txpta.org/


Parent Training and Information Center (PTI)
TEAM Project
4501 Cartwright Road, Suite 605
Missouri City, Texas 77459
(281) 969-5944
prnteam@sbcglobal.net
http://www.prntexas.org/texas-ptis/team-project-2/


Parent Training and Information Center (PTI)
PATH Project
1090 Longfellow Drive
Beaumont, TX, 77706-4819
(409) 898-4684
(800) 866-4726
bramirezpath@gmail.com
http://prntexas.org/texas-ptis/path-project/


Parent Training and Information Center (PTI)
PEN Project
1001 Main Street, Suite 701
Lubbock, TX, 79401
(806) 762-1434
(877) 762-1435 (in TX)
penproject@sbcglobal.net
http://www.prntexas.org/texas-ptis/pen-project/


Texas Parent to Parent
3710 Cedar Street, Box 12
Austin, TX, 78705
(512) 458-8600
(866) 896-6001
http://www.txp2p.org/


Protection & Advocacy
Disability Rights Texas
2222 West Braker Lane
Austin, TX, 78758
(512) 454-4816 (V/TTY)
(800) 252-9108 (In TX)
(866) 362-2851 (Video Phone)
http://www.DisabilityRightsTx.org


Relay Services
(800) 735-2988 (V)
(800) 735-2989 (TTY),711 (TTY)
(800) 735-2991 (ASCII)
(877) 826-6607(Speech to Speech)


Special Education
Texas Education Agency
1701 N. Congress Avenue
Austin, TX, 78701-1494
(512) 463-9414
(800) 252-9668
http://www.tea.state.tx.us/index2.aspx?id=2147491399


Special Format Library
Talking Book Program
Texas State Library and Archives Commission
1201 Brazos
Austin, TX, 78701
(512) 463-5458
(800) 252-9605
http://www.texastalkingbooks.org/


Special Health Care Needs
Children with Special Health Care Needs (CSHCN) Services Program
Purchased Health Services Unit
Department of State Health Services
1100 W. 49th Street,
Austin, TX, 78714-9347
(512) 776-7355
(800) 252-8023
http://www.dshs.state.tx.us/cshcn/


Speech, Language and Hearing
Texas Speech-Language-Hearing Association
2025 M Street NW, Suite 800
Washington, DC 20036
Phone: (855)330-TSHA (8742)
http://www.txsha.org/


State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.texas.gov


Transition Services
Division of IDEA Coordination
Texas Education Agency
1701 N. Congress Avenue
Austin, TX, 78701
(512) 463-9734
http://www.tea.state.tx.us/index2.aspx?id=2147496883


UCEDD
Texas Center for Disability Studies
The University of Texas at Austin
Commons Learning Center
10100 Burnet Road
Austin, TX, 78758
(512) 232-0740
(800) 828-7839
(512) 232-0762 (TTY)
http://tcds.edb.utexas.edu/


Center on Disability and Development
Texas A&M University
Harrington 637
College Station, TX, 77843-4225
(979) 845-4612
http://cdd.tamu.edu/


Vocational Rehabilitation
Department of Assistive and Rehabilitative Services
4800 N. Lamar
Austin, TX, 78751
(800) 628-5115
http://www.dars.state.tx.us/


Department of Aging and Disability Services 
https://hhs.texas.gov/doing-business-hhs/provider-portals/long-term-care-providers/aging-disability-resource-center-adrc

Easter Seals North Texas
1424 Hemphill Street
Fort Worth, TX 76104
888-617-7171
http://www.fortworth.easterseals.com/


Governor’s Committee on People with Disabilities
1100 San Jacinto
Austin, Texas 78701
(512) 463-5742
(512) 463-5746 (TTY)
711 (Relay Service)
http://www.governor.state.tx.us/disabilities


Financial Assistance and Services
Variety, The Children’s Charity of Texas
5555 North Lamar Blvd. Suite E126
Austin, TX 78751
p:512.328.5437
f: 512.420.8225
https://www.varietytexas.org/


Variety’s Peaceable Kingdom Retreat for Children
19051 FM 2484
Killeen, TX 76542
p:254.554.5555
f:254.200.1393
https://www.varietytexas.org/

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Newborn Genetic Screenings

The Power of Newborn Genetic Screenings: How Newborn Genetic Screenings Can Change the Diagnosis

By Penelope Gatlin • 05 Oct, 2023
By Penelope Gatlin October 2023 When our son was born in 2012, he was hypotonic, severely jaundiced, had feeding difficulties and features such as epicanthic folds and small low set ears. We were told immediately that doctors had suspicions of a genetic syndrome. At that time, genetic testing was limited and once abnormal karyotype, Trisomy 21, and Fragile X were ruled out, we left the hospital with an 8 day old and no diagnosis. While no testing was available at that time to identify the ultra-rare syndrome my child had, because it wouldn’t even be identified until 4 years later, I can only imagine the difference it would have made to our journey to have such an answer sooner. Instead, we were unprepared and actually unaware that just because a diagnosis hadn’t been made then that it didn’t mean there wasn’t in fact a rare disease present. Instead, we dealt with issues as they came and worried and wondered what would be next. From feeding issues and reflux and constipation, to low muscle tone and delayed walking, to speech delay, social and emotional delays, toileting delays, diagnoses of developmental delay, anxiety, situational mutism, sensory processing disorder, and autism, until finally genetic testing that revealed the diagnosis that we’d waited 7 years to find out. While receiving a diagnosis can seem scary, not having an answer but knowing there must be one is even more so. In 2019, the day I clicked onto the portal to see the test results, the largest word on the page was POSITIVE. My heart stopped for a second. For the first time, I read the words “Okur-Chung Neurodevelopmental Disorder.” A roller coaster of emotions ensued, including sadness that we hadn’t known this from birth because it would have made us as parents more prepared, and given us more understanding about what might arise next. Relief that we had an answer, grateful that this syndrome had been identified and that he was among one of the first hundred diagnosed with it in the world, and glad we had the privilege to have access to the testing. Excitement that we can participate in future research. Fright that there’s so much we don’t know about OCNDS, and happiness that there is something that we do. A feeling that we are no longer shooting in the dark and have a small but supportive community to rely on and learn from. I am hopeful that one day, all newborns with features like my child will be tested at birth, so parents can have access to the answers, support, and interventions and therapies that can best help their child as soon as possible.
Autism Diagnosis

Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)

By Terri Jordan • 23 Aug, 2023
For 16 years, my child displayed numerous symptoms that left us searching for answers, but a genetic diagnosis remained elusive. I considered having my child evaluated for autism to shed light on their situation. However, when I reached out to teachers, doctors, and therapists, I received frustrating responses: “Your child is too friendly to be autistic.” This statement made me doubt the possibility of autism because my child was sociable. “Your child can transition from one activity to another – they are not autistic.” Hearing this, I questioned whether my child’s ability to shift activities invalidated the need for an autism evaluation. “Your child can look me in the eye and answer questions – they are not autistic.” Observations like this made me second-guess the idea of autism, even though my child faced various challenges. “Getting a diagnosis that does not apply to your child would be a big waste of money.” Despite my persistent concerns, this cautionary advice about the evaluation costs left me hesitant. We finally pursued an evaluation when my son turned 20, and it confirmed that he is indeed on the autism spectrum (severe side). Looking back, I regret not taking this step sooner. I should have pursued the autism diagnosis before we received the genetic diagnosis. There are several benefits we could have gained as a family if we had pursued an early diagnosis: “Early Support Is Crucial:” I now realize that early intervention could profoundly impact my child’s development. We could have accessed the right services and therapies much earlier with a diagnosis. “Understanding My Child Better:” I struggled to comprehend my child’s behaviors and communication difficulties. An earlier diagnosis could have provided insights into their unique needs and thought processes. The education could also help me explain how to react to my child’s behavior to family members. “Tailored Guidance and Resources:” A diagnosis could have opened doors to specialized resources and guidance, enabling me to provide the best possible support for my child. “Connecting with Others:” Being part of the autism community might have connected us with other parents who understand our experiences. Sharing and learning from each other could have been invaluable. “Planning for the Future:” Knowing more about my child’s strengths and challenges could have helped me better plan their future, including education, career, and overall well-being. Depending on your location, many states offer funding and support if your child has an autism diagnosis. I wish I listened to my voice instead of being swayed by experts who didn’t fully understand my child’s situation. Ultimately, I know this decision is significant, requiring careful consideration by parents. Looking back, I wish I had trusted my instincts and sought an evaluation sooner to improve my child’s life.
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